There are more than 15 million individuals in the United States providing home care to a loved one with Alzheimer’s, according to Synergy HomeCare. That figure includes paid and unpaid individuals immersed in 8 to 20 year–caregiving marathons. The National Institute on Aging noted that caring for loved ones with Alzheimer’s can have high physical, emotional, and financial costs to family members.
When my mildly injured shoulder recently became more painful, I thought it was simply a matter of “caregiver calisthenics.” You know, those assisted transfers from home to car to walker (or wheelchair) to appointments, and back again. Lifting, bending, stretching, twisting and turning to help my mother navigate her daily activities is par for the caregiving course, right? Then it occurred to me, perhaps, my injury was sustained in a dream … actually a nightmare.
It was November as we were nearing our 32nd wedding anniversary and also the 1st year anniversary of caring for my elderly parents. Thanks to the generosity of my sister and a friend, we had a stand-in caregiver and a cozy ski resort condo near Vale, Colorado. As I prepared to leave, my to-do list and my worry list appeared as massive as the snow-covered mountains of our getaway location. Getting away physically and mentally was clearly important.
In my dream, I suddenly found myself sitting in the yard, with an alligator wedged between my back and the side of our house. YES, an alligator! “Grab my hand, I’ll pull you up,” my husband said, with an outstretched arm. I could see his arm was within reach, but I was too petrified to grab it. What if I got bit in the back as I moved? Then, as I timidly reached for his hand, a fox lunged at the alligator!
BAM! I had lunged too. I woke up. Face down, nearly five feet from my bed. My nightmare had ended with my worries biting me in the back. All at once, the year had caught up to me, and I was overwhelmed. We seriously needed the upcoming break from our caregiving marathon.
In the early years of my mother’s battle with Alzheimer’s, my sisters and their husbands in the northeast had watched the slow fade of Mom’s “personhood.” Now, my husband and I had accepted the responsibility of in-residence caregiving, along with attending to Dad’s needs.
My father has persisted in loving Mom through it. But he is now weary too, at 82 years of age. Our periodic reviews of what’s working and what’s not in the caregiving picture have led to a new place. We will stay within arms reach — under the same roof — to provide paid and unpaid caregivers to weather this storm called Alzheimer’s.
Last night, I again packed away my to-do list and my worry list. My sister-in-law arrived to be our stand-in caregiver; today began our second getaway. Since the alligator nightmare I take my own words to heart more religiously: “you can’t take care of anyone else if you don’t take care of yourself.” As marathon caregivers, we risk becoming so immersed in our loved ones’ needs, that we forget to routinely evaluate our ability to persist in the battle.
The “patient” needs getaways too: Sunday afternoon drives, listening to favorite songs, singing together, browsing through old snapshots, helping with small tasks (such as folding washcloths on laundry day), taking an assisted walk, engaging in prayer and pillow-talk. At every stage, your loved one benefits from your recharged getaways and theirs, near or far, whether under the same roof or not.
For over nearly twenty years lap swimming has been one of my favorite respites. When I am immersed, I am able to empty my thoughts into a vessel of prayer and thanksgiving. I emerge better than when I entered. That is what stand-in caregivers can provide in your getaway. A place to gather strength and courage, so you can reemerge better able to persist in the marathon, and beyond.
When you build in getaways, you build in hope. That’s the making of beautiful dreams, despite the nightmare of Alzheimer’s. As I unplug for a family gathering of my mother-in-law’s 80th birthday celebration, I’m grateful to all those who have my back. Who’s within arms reach for you?
What are your getaways, big or small? As Alzheimer’s caregivers we ought to remind one another to get away, and simply be in arms reach.